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When RA is All Too Visible

I often read about RA and other autoimmune diseases referred to as “invisible diseases,” which they are for many. Many articles relate the difficulties such invisibility creates for those inflicted in terms of lack of understanding and compassion. I understand and empathize. Pain is silent and shows no outward indications. Been there, and know that!

Sometimes, however, RA creates all too visible crippling deformities. My hands are a textbook example of the crippling caused by RA. I have ulnar drift also known as ulnar deviation and subluxation of all MP finger joints. See photos of 55-year-old female’s hands at this website.

Other photos are RA hand deformities can be seen here:

For most people with RA today the good news is a host of new treatments: biologics, DMARDS and TNF-Alpha Inhibitors and now JAK inhibitors. Good news for those who can tolerate these drugs and for whom they work. These treatments stop the progression of the disease and can put some in remission.

That wasn’t always the case. I was diagnosed with RA in the 1980s. There was no known cause – and still isn’t – and treatments were basically guesswork. I have been prescribed gold injections and multiple anti-inflammatories including: Ecotrin, Mortin, Naprosyn, Clinoril, Feldine, Auranofin (Ridura), Depen, Relafin & Azulfidine, Actonel, Arava, Penicillamines, Oruvail (2001), Methotrexate (oral), Voltaren, Plaquenil, Arava, Aureate, Cortisone injections, Cortisone Medpak, Imuran, Oruvail, Bextra, Kineret, Enbrel, Humira, Methotrexate injections, and currently Orencia. It was mostly trial and error. I was a human Guinea pig.

In addition, I have had multiple surgeries called synovectomies to remove the thickened synovial fluid in the hopes of preventing the joint deformities I wound up with anyway. I had bone spurs and rheumatoid nodules removed surgically. I have had ruptured tendon repairs and a total knee replacement.
Despite all of these medications and surgeries my hands are horribly disfigured and deformed. I have photos and videos.

People unintentionally do and say hurtful things. My deformities cause me pain when people grasp my hands too hard to shake. They cause me great functional difficulty, range-of-motion difficulty, in addition to embarrassment and humiliation. I often think about the episode of the Seinfeld show in which he rejected the idea of dating woman he described as having “man hands.” I was once asked why I don’t wear gloves to hide them!

The tendons in my elbows have contacted causing shortening of my arms making me feel that I look like T-Rex!

My RA is all too visible.


This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.


  • RAWarrior author
    2 years ago

    Yes, new advances are made every day. People diagnosed today have many options I did not.

  • RAD-Suzy RheumaticAutoimmuneDisease
    2 years ago

    I’m sorry for the things that you have endured. I think most if not all people with RA have felt the frustration that comes with being a guinea pig to the medical community. The truth is that (1) There is no cure for RA; and (2) There is no medication that “helps” every RA patient. This is a problem. Another problem that some consider to be of more importance, if not equally important is the lack of knowledge by the medical community and community at large. I’m optimistic that this WILL get better, but only with time. I’m 10 years your junior and I sincerely hope that we both will be able to witness a change in how the community views the disabled in the future. I hope that we will witness more strides in research and medical advances. And, maybe one day in the future a cure will be discovered, and we won’t have to worry about our children or our children’s children suffering like we did. It all takes time. And today. . . I am patient.

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